How bad is your lymphedema?

Are you not having chemo? I did with only micromets in the sentinel node. My surgeon insisted on full axillary dissection and I agreed so that an appropriately aggressive therapy could be designed. Radiation can increase your risk for lymphedema.

Don't be too scared - many women have treatment that affects the lymphatic system and never have any problems (perhaps because they follow the suggested precautions: no needle sticks/blood pressures on the affected arm, etc). That said, some of us seem to have less "robust" physiology and succumb to the beast.

LE is a constant reminder of my status as a cancer patient but I have not been forced to stop playing my violin or working in the garden, which were the triggers. I use compression and massage to manage the swelling. Look at http://www.stepup-speakout.org for lots of good info. Do what you need to do and try not to worry about what might happen!

Linda, I can sure understand your worry about LE, but I hope you won't let LE fears steer you away from whatever is the most effective treatment for your diagnosis.  I have LE after having 5 nodes removed, and I can tell you that it is annoying to me, but generally the discomfort stops there.  I caught it very early and I have been able to manage it pretty well, rarely do I have visible swelling, and my main complaint is an ache that I have every day, for much of the day.  Having said that, it's a low-level ache and when I'm busy, I forget about it for a while.  LE has not stopped me from doing what I like, including kayaking --a real arm activity, which I've done for as many as 6 days in a row, from 5-9 hours per day.  My arm was tired as heck, and I of course was wearing my compression sleeve, but I did not swell up, and my ache was only a little worse than on a typical day.

I'm lucky with my LE and I know it. Lots of women in our LE forum here have it much worse than I do, and it's not because I did anything better or different; there is a certain amount of luck-of-the-draw for LE.  As Vlnrph said, some of us have a less robust lymphatic system, and research is actually demonstrating that to be true.  Too bad there's no way to know ahead of time if your lymphatic system is a four-lane highway or a country lane when you're planning your surgery!

I know some of the women in this forum will weigh in with an honest assessment that will tell you that they are having a hard time with LE. It's very discouraging to have to wear the darn sleeve, go to therapy, do self-lymph drainage (MLD), and of course to put up with aches and tenderness.  I do want to remind you that if you're getting your impression of life with LE from reading in this forum, do keep in mind that forums like this one are a natural 'home' for those whose LE is front and center in their life. I suspect that many whose LE is mild or has been well managed to the point of not being so intrusive, have moved on and no longer participate here.  And, I think that sometimes we post some pretty complain-y comments here, because we can, because it's an incredibly supportive place where everyone understands what we're talking about. And it feels so good to rant sometimes! So please, consider the context of what everyone says here. You are so smart to ask the question--knowledge is such power--but again, don't let fear of LE drive your treatment decision. 

Easy for me to say.  I realize this is a hard, hard decision for you.  Best wishes as you consider your options, and I hope you'll keep us posted on your decision when you make it.

Carol

I was DCIS with a bit of mico invasion, never really heard of LE until after the 3 lumpies when my BS said by the way you have LE and you need PT

call me stupid as I was, then again, it is 5 years and I am alive and healthy with lo level LE.  If I had it to do over with what I know now....I would still have trusted my BS to do the best she could

My LE is managebale and will keep working on keeping it that way

Linda, what a crazy difficult decision to have to make!  

My sentinel node biopsy came about because I changed my care from a local hospital system to one in a big city, so I could have the reconstruction I wanted, which is not offered near home.  The second breast surgeon wanted me to have snb; the first center did not. So I was caught between two opinions as to the best treatment. I chose to do the snb.  I know that my chances of LE without snb would have been negligible, although some women get it when no nodes are taken, so who the heck knows?  Anyway, I'm well acquainted with the problem of clinician disagreement.  All I know is that you make the best decision based on the information at hand and then deal with the present and future, instead of dwelling on looking back.

I'm sending you hugs and virtual chocolate to help you process and make that decision.

Carol